What You Should Know About Insurance Before You Have Genetic Testing

When I began seeing patients for cancer genetic counseling and testing back in the mid 1990s, one of the greatest fears our patients expressed was that genetic testing could tank their insurability. Frankly, genetic counselors shared this fear. We were entering uncharted territory and had no roadmap or history to show us how our patients’ data would be used. If a healthy patient tested positive for a genetic mutation placing her at increased risk to someday develop cancer, would it make it impossible for her to find health insurance? For those already insured, would their premiums go up? If a patient changed jobs, would he have a difficult time getting reinsured? Could his genetic status even prevent him from getting that job or being promoted?

The fear was so pervasive in the world of pre-symptomatic testing that some patients used aliases and paid for their genetic testing with cash. This was problematic for many reasons, including that if the patient tested positive for a mutation, his/her clinicians needed access to that information to justify ordering extra screening and surveillance, and/or prophylactic surgery. Luckily, times changed. There are several laws currently in place (HIPAA and GINA) that protect patients from health insurance genetic discrimination. These laws have flaws and loopholes, but for the most part they provide protection for the masses, particularly healthy individuals pursuing testing to learn about their future risks. Few cases have been documented over the past two decades of attempts to break these laws, but we certainly need to keep these protections in place. The caveat, however, is that these laws do not provide protection against life, long-term care, disability, or supplemental cancer insurance.

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Why? The simple answer is that these types of insurance are based on educated guesses these insurance companies make about how long you are going to live. With life insurance for example, you pay the premiums on the policy for as long as you live, they invest those premiums, and they pay out your beneficiary after you die. If you live a long life, you both win. If you live a short time, they may pay out your beneficiary much more money than they’ve collected from you. If this occurs with a small number of customers, they can shoulder the risk. But if their risk table is top-loaded with people who know they are at high risk to develop life-threatening diseases in the near future, premiums for everyone across the board could become unaffordable, and the business model for this industry could collapse.

For that reason these insurers use many pieces of data to decide whom they can insure, and at what rate. In middle-age and older clients, this includes blood markers, BMI, tobacco use, exercise patterns, and a detailed review of medical records. If medical records include genetic information, yes, they use that too.

What likely makes more sense is for the genetics community to work with the life insurance industry to make sure they are educated about genetic testing and what it means for the client. Each of the professional genetics societies should have experts who will approach, build relationships, and work with these insurance carriers to ensure that they understand genetic testing and what it means for patients, and vice versa.

Several decades ago, I had a patient with a family history of a hereditary colon cancer syndrome, called Lynch syndrome. Many members of this man’s family had died of the cancers seen in this syndrome, and they all carried a single genetic mutation. My patient was tested for this familial mutation and didn’t carry it – great news! It meant that he was ‘true negative’ and that his risk for cancer was reduced to population risk. And yet, he was denied life insurance. It made absolutely no scientific or medical sense, and I called the life insurance company to argue that point. I could not get the agent to listen to reason, or my letter, and they wouldn’t change their flawed decision. I’ve been pleasantly surprised to learn that the industry, as a whole, has evolved over the past two decades. Many plans will, in fact, insure people who carry hereditary cancer mutations, so long as they are seeing their physicians on a regular basis, are having surveillance, and are doing what they can do to reduce their risks of those diseases. Why? Because this is a safer bet than insuring someone who is at high risk and doesn’t know it, or who is ignoring it.

Another common concern for consumers: could my life insurance company drop me if I develop cancer, heart disease, or another condition? The good news is that if you pay your premiums and have been honest during the underwriting process, they cannot drop you. That decision is final and the policy is yours.

Genetic testing is sometimes performed in an acute setting, when a person develops cancer and needs the right treatment, or a child has a metabolic crisis. It is also performed as part of newborn screening or when a person has a developmental delay. Genetic testing in these settings is often time-sensitive, and may be lifesaving or required for lifelong medical management and guidance. But in other settings, such as pre-symptomatic testing, the consumer may have time to consider if and when to be tested, and how this should be timed around purchasing insurance policies.

What advice do I have for anyone considering genetic testing and life insurance?

· Obtain your policy before you have genetic testing, if possible. You can then honestly say that you don’t know your hereditary risk.

· Buy life insurance at a young age, if you can. If you work for a large company, this is often possible for a few dollars per month. I bought a plan in my twenties from my employer that cost a few bucks a month and did not require a medical exam or medical record review, because I was so young. I named my sister as my beneficiary, knowing I could change that if/when I got married and had children.

· Don’t give up! If you need life, long-term care, or disability insurance, find an insurance broker to help you find the plan that best suits your needs.

There has been a lot of speculation that insurance companies may get their hands on individual raw data from direct-to-consumer testing companies to make their decisions, so I asked a few medical directors – off the record - about these rumors. Their comment both surprised and pleased me, “We’d never do that. First, it’s illegal. And second – that isn’t even medical-grade data. Why would we want bad data?”